Whew! Emotions and Alli..........

Well, April is proving to be an emotional stress filled month.

It actually started at the end of March. I was asked as an advocate for the US Pain Foundation to go to the Legislative Office Building to meet with my Rep. regarding HB 1083
on March 31st. This bill will prohibit insurance companies from requiring a patient to "fail first" at alternative prescriptions before eventually allowing the original Rx from the physician to be filled. This practice, "Step Therapy"(also known as "Fail First") is meant to help keep costs down. It does, however, cause chronic pain sufferers to endure continued and in some cases additional pain as they fail at ineffective pain medication. These "first" meds often have undesirable side effects as well. My meeting with Rep. Phil Miller went extremely well as Rep. Miller was very receptive to the information and the meeting was like a visit with a friend. **I have actually known Phil for years since he was the director of our local nature center and brought "creatures" to our preschool classes and we also took our children to the center for a walk on the grounds. He's extremely approachable. We also broached the subject of Medicinal Marijuana........it has made it through committee.......hope the momentum continues! He, too, has a Lab and really enjoyed talking about her and Alli. Alli really has the ability to relax the tenure of the room no matter where we are or what is going on.

Next up......an interview with our local CBS affiliate, WFSB Ch 3.(CT) For the interview I was asked about my illness and how the bill would effect me if passed. Early on, I was forced to try several pain meds that the insurance company insisted on before the prescription from my doc was ultimately filled. Because my breathing is greatly affected due to the weakness of my proximal muscles, primarily my diaphragmatic muscle, any narcotic tends to depress my lung function. For this reason I learned to not ask for meds for pain. So now, when I must take something for pain it usually has to be very strong as I have a relatively high tolerance for pain from pushing the pain aside and suffering in silence. The passage of this bill would mean being able to take the proper med at the onset of additional pain. It would mean that thousands of chronic pain sufferers in CT could get the help they need from the doctor who knows them best and not from a company who knows them as a policy number. And, as Connecticut is known as the insurance capitol of the world, passing HB 1083 here could serve as a model for other states
and hopefully pave the was to acceptance across the country. Although the "story" was not about service dogs, Alli was featured sitting by me, walking along close beside me, opening a door and helping me up from a sitting position. We also spoke about the comfort she provides, the emotional connection and how these help to ease my pain just by being there for me. The really neat thing is that I absolutely loved doing the interview and speaking with Rep. Miller. The gal from the media group that put it together said that there might be more opportunity to do the same thing. I've also been asked to do an OPED piece. It feels very fulfilling to know that I may possibly be helping others by putting myself out there!

Next up: my parents 56th anniversary would have been on April 9th. We lost my dad in June of '04 (12 days shy of his 86th birthday!), and my mom in April of '07 (2 days before my birthday). Each year Mark and I provide the altar flowers at our church on the Sunday closest to the 9th. This year it was just this past Sunday, the 10th, and our local florist did an amazing job. My mother's favorite flower was the yellow rose, and my father brought her a bouquet of mums every Thursday on his way home from work. Don't ask "why Thursday", I have no idea why! So I always ask for an arrangement with these 2 flowers as the focal point and then trust them to work their magic. What you can't see in this picture is that the Connecticut River is about 50 feet beyond the grave stone. It's quite peaceful since as you stand in front looking at the stone and the river quietly flows just beyond. I don't go to cemeteries as a rule, and other than at their services I have only been to my parent's graveside 3 maybe 4 times until about a month ago. For some reason, having Alli with me makes it easier and I have actually spoken to my parents and introduced her to them. I know they would be comforted knowing I have her as my illness progresses.

I have several doctor's visits in the next 2 weeks, my least favorite being my neurologist on Friday at Yale. He's very nice, well respected by his colleagues, has an excellent reputation, but ............it has been over 18 1/2 years and going once a year and hearing that there are still no answers is really quite depressing. I almost always cry after I leave the office but last year was not so bad with Alli by my side so I'm hoping I feel the same on Friday.

On April 25th, the day after Easter, the US Pain Foundation is actually flying Alli and me to Texas to meet a new doctor who has had great success helping those with chronic pain. I am so excited! Two of my classmates from NEADS, Ellen and Karin, have seen Dr. Rhodes and are doing well. Karin has been in Texas since the week before Christmas. She lives in Mass., but since she was on a lot of opiates she had to be "weaned" off them before the treatment could really be undertaken. She will be there when I am and will pick me up at the airport and drive me to my appointments during the week. She can plan her appts. for the same time and we'll be able to spend time together and Alli and Lucky will be able to exercise together. The only problem with this is that I don't like flying. Alli flew with her "weekend puppy raiser" before she came to me so she should do fine. The Foundation informed the airline that I travel with a service dog and requested a "bulkhead" seat. Ellen was able to have Maggie in front of her seat as she is smaller than Alli. Alli would never fit there.........she is really one big girl! We were told that if the airline can't accommodate us w/ a bulkhead seat they will have to bump us to first class! I've got my fingers crossed!!!!!

This month seems to be flying by........I'm just looking forward to Texas and some relief!
Talk to you all soon,
Peace,
Wendy

Pain, Politics and Patience.........

I don't have any awesome pictures this time, but, this post is more along the lines of a "political stand".

Paul Gileno, President/Founder US Pain Foundation, put me in touch with two individuals who arranged for me to meet with our Representative, Phil Miller to discuss with him the ramifications of "Step Therapy(also known as "Fail First") in order to help the passage of HB 1083 in Connecticut. HB 1083 is a bill which when passed will prohibit insurance companies from following the practice of "Step Therapy(Fail First)". In Step Therapy, an insurance company can require that a patient try and fail at one or more prescriptions before being allowed to finally take the prescription the doctor originally recommended. This practice is done so that the insurance companies can ultimately save money...... By doing this, people with pain are forced to try pain meds which don't work as well as the originally prescribed med. These meds often times have undesirable side effects as well as putting the patient at risk for further and increased pain and/or complications. While trying the prescriptions the insurance company approves of, the patient often experiences a worsening of symptoms which are more difficult to get under control when the patient is finally able to take the original prescription. The patients doctor knows their patient and what is best for any given condition. The insurance companies should not be allowed to take the doctors' place in prescribing necessary and beneficial treatment/medications. Every individual has a different story even when having similar illnesses. While everyone needs to be their own advocate when dealing with their health, the doctor is also an advocate when prescribing the medication they feel is appropriate for their patient.
The bottom line is that Step Therapy policies:
1. can result in increased health care costs.
2. contribute to the administrative burden in medical offices
3. often require patients to endure monetary, physical and psychological distress
4. may lead to the accumulation of unused medicines in home medicine cabinets

**** "Step therapy policies override a treatment decision between a health care provider and a patient. Even when a health care provider thinks the treatment may not work, these policies can unnecessarily force patients to: pay cost-sharing for the first steps of therapy and for additional medical visits; suffer physically because effective treatment is delayed; and, tolerate side effects from inadequate medicines."



If you're a Connecticut resident, I urge you to write and/or call your Representative or Senator and ask them to support "HB 1083" to put an end to unnecessary insurance practices.

**** From a letter written by Paul Gileno, President US Pain Foundation to
CT State Representatives

Birthdays and Migraines w/ Alli as the Gift that Keeps On Giving!!

Well, today is Alli's 3rd birthday!!! We've come a long, long, way! While Alli remains one of the happiest dogs on earth, she's also learned when it's okay to "be a lab" and when it's not. I think the hardest thing for both Alli and I to learn has been that just because she loves everyone and everything, that doesn't mean she can constantly act on this belief! We have been working very hard these last few months to "iron out" some little habits of hers that are just not appropriate. One of these habits has been barking when she sees another dog or a person walking down our road. The occasional bark to alert is to be expected and is okay. But, Alli was doing it almost all of the time and since we live at the end of a road which leads into a cul-de-sac, it's only natural that everyone walks up toward our house then back down. I am thrilled to say that that behavior has all but stopped. And, when she did bark it wasn't an act of aggression, she just wanted to let others know that she was there and ready to play! Another troublesome habit was when Alli barked in the car whenever we had been out and pulled into our driveway. It probably doesn't sound that bad, but when you've been out for a relaxing drive and come home and all of a sudden there's a loud bark from the back seat! It's enough to scare the,...........well, you get the point! That, too, is no longer an issue! My biggest worry was that by settling Alli down for all of these corrections it would calm her down too much.....and I love her amazing personality. I think it's worth a few idiosyncrasies!

While all this has been going on, so too have some pretty amazing developments as far as Alli helping me!!! For some time Alli has been helping to calm me when I get my "severe a-typical" migraines. She would stand on the bed next to me and then lie along side me stretched out leaning her full weight on me. She stays that way, until I tell her "I'm okay". Well, in the fall, on several days she leaned against me in the morning when I went into the bathroom instead of lying on the bathmat. I realized that on those days I ended up with a migraine by late afternoon. I started to pay attention to the......phenomenon.........and it turned out that she correctly sensed the next 3 out of 4 migraines!! I had an appointment with my neurologist in early December and asked his opinion. I fully expected him to say that it wasn't possible for Alli to "predict" my migraines......but.......he said it was most definitely possible! They have always asked me if I notice the "aura" some people experience foretelling the event. I never have. The doctor said that after being together for a year, Alli is probably sensing this "aura". I have been told by several people that perhaps this "aura" can be sensed like a diabetic who's sugar has dropped (?)they give off a "fruity" aroma. Perhaps my "aura" gives off some perceivable, at least to the fine tuned lab's sense of smell, scent or something along that line. Needless to say, my doctor changed my med that I take when I think one is coming on(I was still getting 2-3 migraines a month which the neurologist felt was still too many), and I now take it when Alli "marks" the impending onset. I have only gotten one....possibly two......in the last six weeks, thanks to the signal Alli gives by leaning against me beginning in the morning when I first rise. I've said it before, and I'm sure I'll say it many more times.......Is there no limit to what my partner Alli can do for me and with me?

So, as I started with, today Alli is 3 yrs. old. I took her to PetSmart and let her pick 2 toys. She picks them by responding to the sound they make. The one in the picture above has 5 different "squeakers" scattered throughout the stuffed dog. Another one is kind of like a cow and has velcro at the bottom. A plastic water bottle gets inserted inside and when Alli bites on it, it "crinkles". When the bottle is too chewed up, you replace it with a fresh one.....they're empty, of course! She actually loves the crinckley one better, but I think I should pace her with it so she doesn't chew the cow apart.

Last, but not least, I am very fortunate to be involved with the US Pain Foundation. It was through this foundation that I became involved in the INvisible Project. Now, they are going to fly me, Alli and my husband to Texas to see a doctor who specializes in pain management. Hopefully I'll be able to go in April. It can't come too soon as my pain is never ending. And, not only is it from my muscles weakening and complaining but I also had surgery in January for a "SLAP Tear". I am just finishing my first month of occupational therapy. Up until now it has been passive then active range of motion. We are starting strengthening exercises and I was up all last night from the pain despite icing it after therapy and twice more before bed. Two of my NEADS classmates have taken the trip and have each had a positive experience. I hope to take my laptop with me to Texas so that I can chronicle my experiences, positive or otherwise.

Until next I post,
Peace,
Wendy and Alli

Alli, Snow, and Good Friends!

So, the snow just keeps on coming!!!! This was the first time in several years that I've been able to enjoy the beautiful white stuff! My balance is so bad that snow and I just don't get along. But, with about 22" on the ground, it actually seemed to support me better than using my cane!! Besides, I'm having surgery on my left shoulder tomorrow so I figured; "What have I got to lose?" With several months of OT ahead of me, I'm out of the picture as far as snow goes for the rest of this season. And, as my muscles continue to weaken, balance shows no improvement, and not sure if I'm going to have my knee repaired or when that would be.....I don't know if I'll get in the snow again. But, that won't stop me from absolutely loving it!!!!

Right now, my trainer at NEADS, Erin, is helping me nip a couple of negative behaviors in the bud as far as All is concerned. She has been barking, and it is steadily increasing. With the recovery time ahead, I wanted to at least get a handle on it since I will be having others help me walk her and play with her. I still need to be present, the verbal commands will come from me, and when others throw the ball/toy for her at play time, I'll be the one telling her what to do.

Barring any major complications, it appears that sometime around March Alli and I will be going to Texas to meet with a new doctor to get much needed help with my pain, and muscles. We'll be able to do this thanks to The INvisible Project which I was part of. My NEADS classmates, Ellen and Karin, have been to the South Texas Interventional Clinic and have made amazing strides. The doctor, Dr. Rhodes, invented a machine that appears to use electrical stimulation on the nerves to help with pain and muscle difficulties. Ellen and Karin knew that financially it was not a possibility, as we are still struggling to keep Em in school, and so they approached Paul Gileno, the Founder and President of US Pain Foundation to see if there was any possibility that the INvisible Project could help me get to Texas.

It always seems that just when you begin to lose faith in life and the human race, someone steps up to the plate and says......Don't give up just yet. I am continuously warmed by the good deeds of others, and for this reason I try to help where I can and find myself forgetting my troubles and pain while easing others'.

Talk to you soon,
Wendy!

Together Again!!!

I can't believe that I haven't composed a new
posting September!!!! So much to catch up on! As you can see by the picture Karin and Lucky were able to be reunited!!!!!! The look on Karin's face tells the whole story. I've learned that I rely on Alli more than I ever thought I would and the benefits that can't be planned on have truly made her an extension of me! Karin, too, came to depend on Lucky; for companionship, letting her know when her blood sugar is dropping, helping to keep her from falling, etc......... The peaceful look on Karin's face as she looks at or strokes Lucky can't be duplicated except by another member of an assistance dog partnership who understands the bond formed by mutual unconditional love.

Ellen, too, has reaped the benefits with Maggie. Maggie understands when Ellen is not feeling well and tells her by her behavior. She has also let Ellen know when she has stopped breathing at night by licking Ellen's face. Ellen is able to sleep a bit easier.....it's all relative........knowing that Maggie is by her side.

Alli knows to walk closer to me on the days that my balance is worse and snuggles with me when I'm feeling "blue". When I'm on my bed, with one of my many migraines, Alli gets up, stretches out alongside me and then leans......actually flops!......against me until I say, "I'm okay". At that point, she gets up, and curls up at my feet. Alli has actually begun to know ahead of time when I'm going to have a migraine! She's done it twice so far! She starts the day off by leaning against my legs every time I sit, and really sticks close.....usually against me.......the rest of the day. She's only done this twice, but both times I had "killer" migraines. I have also noticed that I have been so much calmer, happier with myself since Alli came into my life!

Even though it's taken forever for me to post again, it's not that I haven't wanted to. You know, life is what happens when you stop to take a breath. I've had a relatively difficult fall and at this point it doesn't look like it's going to get any easier in the next few months. It's taken me years to be able to say that, and not the "canned" response of, "I'm just fine, couldn't be better" even when I was feeling horrible. I guess Alli is a large part of that. Also, knowing Ellen and Karin have allowed me to feel comfortable in my own skin. When we get together we know that each of us are in the same boat. We have illnesses which make life difficult but when we're together we can discuss our aches, pains, feelings because we know that each of us, in our own way understands what the others are going through.

I hope you all had a restful, tasty Thanksgiving and are looking forward to the holiday season.

Alli and Maggie........and Lucky?

While I've used this photo in the past, I chose to post it again because it shows Maggie, Lucky, and Alli back in January. In my last couple of posts I asked everyone to hold Karin and Lucky in their prayers as Lucky struggled with an unknown health issue. Unfortunately, Lucky was returned to NEADS in August as Karin was placed at the "top" of the client list to receive a new dog. Karin is not yet ready to entertain the idea of a new companion and holds out hope that something can be done for Lucky. While it appears that his stamina issues have not been as apparent since returning to NEADS, one of our trainers feels that there could be something astray with his neck and/or spine. It would be great if an answer either way.....hopefully in Lucky's favor........could be found before a new dog becomes available for Karin. When playing "Devil's Advocate" recently, I asked her what she would do if she received a call from NEADS telling her that they had found another "perfect" match for her. She replied that she would have to find out if an answer to Lucky's health problem had been found.....if not she would probably choose to wait. I know that if the tables were turned I would most assuredly have the same response. I honestly cannot picture what my life would be like without Alli. It is truly amazing how quickly you become dependent on your service dog, and the love is truly "at first sight" and certainly mutually unconditional! No matter what Karin chooses to do when the time arrives I know that Ellen and I and the "girls", Maggie and Alli, will stand by her for support with an arm around her so that she knows she is not alone..........

Ellen and "Maggie" and "Alli" and I went to visit Karin for support and love shortly after Lucky left. I've often said that while Alli may be the designated "class clown" she definitely knows when she is working, when her crazy personality is appropriate, and when it's not. When we arrived at Karin's, Ellen and Maggie were already there and I believe that both Alli and Maggie sensed Lucky's absence. Alli enjoyed her visit, but she was much more subdued than she normally is at Karin's, and I didn't need to repeat a single command. ***(I try to very rarely repeat, but sometimes a stern look from me is needed to accompany a command when in an active environment......not so this time!)

I know that it can be very scary when you think your service dog is ill or injured. I have taken Alli to the vet a couple of times when I've found "lumps". Once it was a piece of stick which had gotten under the skin on her elbow, and a couple of weeks ago it was where the rib goes from bone to primarily cartilage. I give Alli a "massage" almost every night when I go to bed, so I don't know how I missed this latest bump all these months......nonetheless, it feels the same as when my children were small (they all have asthma) and they became ill suddenly. I've always been very calm on the outside when in emergent situations but that certainly doesn't reflect how I feel on the inside. I often muse over my love for Alli, especially when my friend's granddaughter, Olivia, falls asleep with a hand on Alli's head as it rests on her car seat. As "Liv" drops off to sleep she whispers....."I love Alli"........

Tough Times and New Life!!!!!

Isn't amazing how in the midst of uncertainty and chaos a little peace seems to appear to make everything seem worthwhile!?! As I mentioned in my last post, Lucky is having some serious health issues and despite undergoing a barrage of tests the powers that be are still unable to find a cause. He continues to collapse under exertion and is not always able to get himself up. Karin continues to to stay strong but has no idea where this will lead or even whether there is to be a positive outcome. I hope you will all continue to hold Karin and Lucky in your prayers and think good thoughts for them often.

And there is was..........the peace one looks for when it seems unattainable. My oldest daughter, Bethany, and her husband, Frank, brought a beautiful baby girl into the world nearly a week early. Madaline Lorraine Russo arrived at exactly 3:00 am on Monday, August 2nd. She weighed in at 6 lbs 7.4 oz and was 19 1/2" long/tall. I was blessed to be present and just as I said at the births of my 3 children it is indeed the most awesome gift one can experience. Bethany asked me to be with them since I delivered her and her siblings using the techniques I learned in "Lamaze" class and they were unable to attend any such classes. They both did great! A little less than 12 hours after Bethany arrived at the hospital Maddy was born!

Now, perhaps you're wondering how Alli fits into all this.....or perhaps not. Either way, I'm going to tell you. We had 2 previous visits to the birth center at the hospital. The first was due to a probable migraine but the doctor wanted to be sure it wasn't something more serious, toxemia, etc. The second visit was because Bethany had early labor contractions and severe back labor/pains so we spent the night. In any case, Alli was just fine each time. She pretty much slept the whole time, unless she heard me move, then her head would pop up and she'd wait for me to give her a command. So, when we showed up Sunday afternoon and the nurses asked if she'd be okay considering that sometimes it can get loud if the mom yells or winces. I said that she would be fine(I actually wasn't sure how she'd react under those conditions but I had faith that she could do it). As before, Alli slept until I fed her.....I came prepared for a long stay. She did just fine until I went out to the family waiting room so that Bethany and Frankie could get some much needed rest. Alli behaved as usual, except she just couldn't settle down. She would lay down when told to but she just kept looking around, watching the door into the center and looking up at me. Like a new mother I went through a mental checklist; she had her exercise, she was fed, had her veggies, plenty of water and I took her out shortly before we went to the waiting room. I had noticed earlier in Bethany's room that she had laid next to the hospital bed a few times and watched me all the while. I started to wonder if she was anxious because she knew that something was about to happen. Right around 2 a.m. Frankie came to get us as Bethany was ready to begin pushing. Alli knew exactly where we were going. She turned before I told her and then went right for Bethany's door when we arrived. She walked right in and curled up on her blanket which I had placed by the wall out of the way. Within 5 minutes she was OUT! She was soooooo comfortable that she snored a bit and had a dream.........one in which she was obviously running somewhere because her paws looked like she was trotting on her side! Since Bethany had an epidural the room was relatively quiet......almost peaceful as she brought their daughter into the world. Alli continued to sleep away the time even with Maddy letting everyone know she had arrived, the nurses moving about the room weighing and readying Maddy for her parents......and me.......running around playing photographer trying to get pictures so that Bethany and Frankie could look back upon the birth of their first child with a smile.

The thing that really stuck with me about the birth.....besides Maddy......came when I thanked the doctor for an awesome delivery and added, "I guess Alli did just fine!". She said she was so happy to have been present and that she really liked having Alli present. She said Alli added a calming effect to the experience for her and she felt sure Alli had done the same for the rest of us as well. I feel I can answer my own question, "is there no end to what Alli can do to help and comfort". The answer is a resounding "YES"! She is truly the answer to all my prayers.